There are no extra pieces in the universe...
Each one of us is here for a reason.
We all have a special place to fill.
A unique place...where only we fit.
In our own individual way, we are all part of Life's Jigsaw Puzzle.
(Author Unknown)

Thursday, April 9, 2009

My brother, Randall, would be 44 years old today. He died in a motorcycle accident when he was 25. I can't believe he's been gone so long. Sean was only 2 years old when he died. Neither Clayton nor my nieces were even born. At the time, and for a long time after, we didn't see how life could go on. But, eventually, with the births of babies and the healing of time, it did. It wasn't the same life, but we learned to live a new normal. Even after all these years, I cry as I type this. I miss him. I wonder what he would be like at this time of his life. Would he have married his girlfriend? Would he have kids? Would he be happy? One thing I do know is we have a guardian Angel in heaven looking over us and we will see him again one day.

Saturday, February 14, 2009

It was Sunday, February 14, 1988, Valentine’s Day.I was 36 weeks pregnant and eagerly awaiting the arrival of my first child.Just four more weeks and my precious baby would be here.My sister-in-law had me a baby shower on Saturday.I had already had one baby shower in Marion thrown by my best friend.The nursery was ready – it had been for a couple of months.We had started our Lamaze classes.At that time the “natural, no drug” approach was big.I could hardly wait until the baby arrived.Turns out, I wouldn’t have to wait much longer.

My mom and dad had planned to come up on Saturday for my baby shower but my dad was not feeling well so they didn’t come on Saturday but did get to come on Sunday.My mom had baby things to bring me and she wanted to see what I got at my shower.I didn’t sleep well Saturday night.I kinda had some stomach cramps and my back was hurting.I didn’t think that much about it.My mom and dad got to our house and I was in the shower.Carl had already told my mom how I was feeling and she barged in on me in the shower.She knew that I was in labor.I insisted I was not but she insisted I call the doctor.I called and when I told them how I was feeling they thought I should go to the hospital and be checked out. Well, a little before noon off we went to the hospital.We lived 30 minutes away from the hospital so we all rode in the same car.All the way to the hospital I said I couldn’t be in labor, I wasn’t due for four more weeks.And, it was Valentine’s Day, I couldn’t have a baby on Valentine’s Day.I got to the hospital and they put me in a room.They hooked me up to a monitor and said I was having contractions.My mom was in the room with me and Carl and my dad were in the waiting room.A doctor came in and examined me.His eyes got big and he said “You’re dilated to 5 cm.You’re going to have this baby today.”I turned to my mom and said “Go get Carl NOW.”I couldn’t believe it.I couldn’t believe my baby was coming early.I wasn’t worried by that.I was excited.I didn’t have to wait any longer to see if it was a girl or a boy.We didn’t find out ahead of time because we wanted to be surprised.We had a girl’s name picked out and a boy’s name – Kathryn Elizabeth or Sean Michael.It wouldn’t be much longer before I would find out.I progressed quickly.The doctor that was on call wasn’t my regular doctor, who was a male.The doctor on call was female.She was very calm and very caring.She came in a few times to check on me and would hold my hand through the contractions.I didn’t want to take any kind of medicine because I didn’t want to look like a wimp.I would breathe through the contractions and it did help a little.Everything went pretty fast so I didn’t really have time to think about it.It soon came time to push and they wanted to take me to an operating room in case there were any problems.They gave Carl a pair of scrubs to put on and we had quite a laugh about those.They were huge.Carl isn’t real tall and they had given him scrubs that would have fit the Jolly Green Giant!!I think we were laughing so we wouldn’t be so nervous.I was nervous about spitting out a baby, not about anything being wrong.That thought hadn’t even occurred to me.

My pregnancy had been normal.I had all the prenatal care, including sonograms.There was never any mention of him being small or anything else.I wasn’t sick at all and I loved being pregnant.I loved feeling that life inside of me.Looking back, I am so glad that I didn’t know anything ahead of time because I was blissfully unaware of how my life was about to change and the journey I was about to embark upon.

It was about 4:00 p.m. by now.We went to the operating room and I was finally able to push.That actually felt good.I didn’t have to push too much and the head started coming.I remember the doctor saying “It’s a good thing he’s got a small head or he wouldn’t be coming out this way.”I ended up having to have quite a few stitches afterwards.At 4:27 p.m. we heard “It’s a boy.”I, of course, cried.Carl did, too.It was very overwhelming.Unfortunately, we didn’t hear much else.There was a very weak cry.Carl said he knew something was wrong right away.I didn’t.All I wanted to do was see my baby.All I got was a quick peek.They immediately took him over to a table and started working on him.He wasn’t crying and wasn’t breathing well.They said they had to get him to the nursery right away.They took him to the regular nursery to give him oxygen and warm him up.He weighed 5 lb., 4 oz. and was 18 inches long.I did see that he had a head full of black hair.It was parted on the side.He was so tiny but so adorable.

I was taken back to my room and we were not told a whole lot.My mom and dad left to go home because my mom had to work the next day.We really didn’t think there was anything wrong.At that time it was not a big deal to breast feed and I had already decided before he was born that I didn’t want to try it.They gave me a pill to dry up my milk.It was really a good thing because he would have never been able to breast feed anyway.Also at that time you didn’t really keep the babies in your room.They were in the nursery except for feeding time.Sean didn’t get to come back to my room at all because they were having trouble getting him to eat.Every time he would suck he would quit breathing and turn blue.Carl went down to the nursery to see him but couldn’t hold him or touch him.We still didn’t know what was going on.We both slept that night and Sean stayed in the nursery.The next morning he still wasn’t able to eat without turning blue and the decision was made to send him to the NICU.The pediatrician came in to tell me that they were transferring him to the NICU to see if they could figure out what was going on.Soon two nurses wheeled him in for me to see him before going to the NICU.I was upset at that time and wanted to hold him.One nurse asked the other one if I could hold him before they took him but she said no, they wanted him to go right then. It was only two floors away in the same hospital but at that time it felt like they were taking him to the moon.I just wanted to hold my baby and know that everything was going to be okay.

Once he was in the NICU they started running all kinds of tests.We still didn’t know what was going on or if something was wrong.We suspected that something was wrong but we just thought he was sick.I was discharged from the hospital on Tuesday morning without my baby.That was, at that time of my life, the hardest thing I had ever had to do.Little did I know the challenges that were on the horizon.

Sean was in the hospital for 9 days.He was discharged on February 23, Carl’s birthday.He was discharged without any diagnosis or explanation for why he was so small.We brought him home and began the next chapter of our lives.We were finally a family and it didn’t matter what we had to face, we could do it together.

Monday, February 2, 2009

Today's CdLS blog challenge is:What kind of jerry-rigging or child-proofing have you done at home to meet the needs of your child with CdLS? This could be a serious or comical post.

We have certainly Sean-proofed our house.

When Sean was little he could run like the wind so we have fences in our front yard and our back yard. There are locks on the gates so that he can't open them. Now that he is older, he moves much slower and that has helped alot.

We have locks and chains on all of our doors. When people come to our house and then try to leave they say it's like trying to get out of Fort Knox.

We don't have end tables because when we did have them Sean would clear them off. He broke many a lamp until we got smart and got the kind that attach to the wall.

Speaking of attached to the wall, most of our furniture is attached to the wall. He has on more than one occasion knocked over large pieces of furniture. He still tries but doesn't seem very interested when he sees they aren't going to go anywhere.

All he has in his room is his bed and a dresser. It's long enough that he can't get it turned over. We got Clayton a chest of drawers a few weeks ago and put it in Sean's room until we could get it up to Clayton's room. Guess what? Sean knocked it over. It had only been in his room for about 10 minutes.

When he was small we could have things on the kitchen counter but not anymore. We call him Stretch Armstrong because it is amazing how far he can reach.

I have a wooden tray that we keep the salt, pepper, toothpicks and napkins on. We can't leave it on the table while we're eating because he pushes it off (actually, he pushes it into his brother's plate which doesn't make him happy).

The bathroom door has to be kept shut and we have the childproof covers on the knobs. If he finds it open, he will get in the bathtub and turn on the water. Luckily, the few times that it's happened it's been the cold water.

We have a gate permanently attached to the wall between our kitchen and front room so that we can keep him out of the kitchen when we're cooking. He doesn't bother the trash in the house but we had to get a trash can with a lid that snaps on in the motorhome because he was constantly turning it over.

And, don't even think about leaving a pen or marker within his reach. I learned that the hard way - twice. (I'm not a quick study) Once we had brand new carpeting in the front room and I turned my head for 2 seconds. When I came back, he had found a black magic marker and performed his magic on the floor and TV cabinet. Luckily because the carpet was new and had the stain resistant stuff on it, it came out. Most of the marks came off the TV cabinet but there are still a few there. He also found one in our motorhome once and colored from one end of the motorhome to the other on the cabinets, fridge, stove, everything in sight.

I'm sure there are other things that I can't even think of, like others have said, this is just normal for us. You do what you have to do to keep everyone safe.